NEONATAL ETHICS AND MANAGEMENT OF FAILURE TO THRIVE
| THE GRAY ZONE IN NEONATAL ETHICS —Theodore R. Thompson, MD, Professor of Pediatrics, and Director of Clinical Education, University of Minnesota Medical School, Minneapolis |
| Ethical decision making in end-of-life care in neonatal intensive care unit (NICU): involves parents and explanation of options; decisions complex, agonizing, difficult, often unique, educational, and humbling; prognosis and outcomes uncertain; collaborate with parents with support from family, friends, clergy, and support groups when deciding to limit or withdraw treatment |
| Areas that require ethical decision making: limits of viability (22-24 wk gestation); congenital anomalies; nonresponsiveness to therapy (as in, eg, chronic lung disease); severe perinatal distress; multiple anomalies; genetic disorders; hypoplastic left heart; massive intraventricular hemorrhage; need for extracorporeal membrane oxygenation (ECMO); ventilator dependence; multisystem organ dysfunction |
| Common questions and considerations: offering life-sustaining medical treatment at parents’ request in spite of medical judgment that withholding treatment preferred course of action; greater suffering from treatment; are parents best-equipped to make decisions? role of hospital ethics committee and state legislature; what do you do if parents’ wishes differ from accepted medical care? effect of decision on quality of life; resource allocation; finances; staffing; family problems; withdrawal of fluids and nutrition from newborn infants; treatment of hypotension; analgesia; is euthanasia ever acceptable? resuscitation of 24-wk baby—expected confinement time in ICU 3 to 4 mo; reduced maternal and paternal contact; poor nutrition; painful procedures; social influences |
| Do no harm: do all to benefit patient; allocate resources equitably; no discrimination on basis of disability; best interest of infant—subjective; maximize benefits and minimize harm; permanent handicap justifies decision not to provide life-sustaining treatment only when patient’s condition so severe that treatment unlikely to result in net benefit to infant; futility—treatment that does not significantly extend life or postpone death; withholding and withdrawal equal from moral and legal perspective; withdrawal—more emotional and difficult; allows better evaluation of infant; evaluate continuously when transferring from delivery room to NICU |
| Delivery room resuscitation: parents almost always request intervention; resuscitation and intensive care usually started at 24 wk gestation, with continuous evaluation; decisions in delivery room difficult because of crisis-like atmosphere; orders for no cardiopulmonary resuscitation (CPR) before death increased from 16% to 69% in past 10 yr |
| Measuring success: Apgar scores and condition of mother; discharge from NICU; determine definition of success to parents; outcomes to consider—increased severity of cognitive delays or mental retardation; cerebral palsy; hearing or vision loss; home ventilation; behavioral and psychiatric disorders; learning disabilities; variation in values—study assessed survivability as good outcome while other studies considered only survival without devastating neurologic deficits good result; some physicians claim that 1% chance of survival despite neurologic devastation good outcome, while many nurses felt differently |
| Experimental therapy: lack of data about investigative therapy in babies of 23-wk gestation; permission from parents required |
| History of ethical dilemmas: 1973—physician allowed 43 infants to die over 30 mo (multiple conditions); physicians worked with parents to make decisions; Baby Doe regulations (1984)—to prevent discrimination against individuals with handicaps; all infants, except those prematurely born and those with anencephaly, to receive life-saving treatment without consideration of quality of life; exceptions included futility, inhumane treatment, and irreversible coma; development of hospital ethics committees; Baby Doe regulations struck down by courts; Child Abuse Amendments—similar to Baby Doe regulations but include premature babies; not mandated if child dying and treatment prolongs dying process, child irreversibly comatose, or if treatment futile; give treatment in emergency situations |
| President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1983): ambiguous or uncertain situation at 23 to 24 wk—75% of physicians agree to forego treatment if parents prefer to; futile situation—≈33% of physicians give care if parents want care; clearly beneficial at 25 wk gestation— 91% of physicians follow parents’ decision |
| Technology: advances in treatment of newborns more rapid than those in ethical decision making and may lead to prolonged hospitalizations; “courts tend to go with the parents” |
| Quality of life: many people with severe impairments have high quality of life; do not impose personal views on parents; do not devalue disabled people; work with parents |
| Guidelines at speaker’s facility: <23 wk—give comfort care; 23 wk—recommend not resuscitating, but perform when demanded by parents; >24 wk—resuscitate (survival rate ≈50%) |
| Disability rates: 50% in babies born at 22 to 25 wk gestation (50% of those severe); at 6 yr of age, 85% have moderate or severe disabilities (excluding educational problems and behavioral disorders); overall severe disability rate at 6 yr of age 22%, moderate disability rate 24% |
| Gray zone in neonatal ethics: 23- to 25-wk gestation; 500 to 600 g; at 25 wk, give full critical care; speaker believes when particular outcome likely, absolute certainty may not be possible or always necessary; work toward survival with acceptable quality of life; balance benefits and burdens; decisions always based on patient’s best interest; review and ensure adherence to “do no harm”; collaborative process between parents and health care team does not increase grief or interfere with mourning; spend time with parents |
| Questions and answers: Health Insurance Portability and Accountability Act (HIPAA) regulations—all information kept private; ask parents whether they want relatives involved; American Indian population and newborns—parents usually compliant with physician recommendations; work with families and other individuals brought in by families; selective research on infants—eg, studies on nutrition and pulmonary hypertension; requires specific well-written and plain consent forms; parents must know exactly what researchers are doing; be careful; can parents give up custodial rights when in conflict with physicians?—yes; can be avoided with conversation and help of support groups |
| FAILURE TO THRIVE —Joseph J. Sockalosky, MD, Assistant Professor, Department of Pediatrics, University of Minnesota Medical School, and Pediatric Endocrinologist, Children’s Hospitals and Clinics of Minnesota, Minneapolis |
| Failure to thrive: applied to infants and children during first 3 yr of life; symptom (not diagnosis); definition varies with health care provider’s (eg, child abuse specialist, gastroenterologist) perspective; does not imply specific diagnosis or cause; consider effects on cognitive and behavioral development of child; definition—includes ≥1 criteria; weight velocity below tenth percentile when adjusted for age and sex of child; weight decrease of >30 percentile points over time on typical growth curve; weight less than eightieth percentile expected for measured length, age, and sex of child; weight loss not associated with acute illness; weight below third percentile for age and sex of child (not sufficient criterion to establish concern about failure to thrive) |
| Causes: organic—disease intrinsic to child; nutritional deficiency; frequent recurrent acute illnesses; chronic disease (overt or occult); nonorganic—disease external to child; psychosocial or emotional issues; nutritional issues— inadequate intake or absorption or increased metabolic needs; involvement of ≥1 nutritional factors |
| Inadequate nutrition: most common cause of failure to thrive in primary care setting; not synonymous to malnutrition; causes include failed breast-feeding; related to frequent minor illnesses; can be due to lack of parental knowledge, lack of resources (eg, money), difficult feeding (“not every baby knows how to breast-feed”); can be due to food faddism and chronic organic disease |
| Disease causes: usually obvious on detailed history and physical examination; children may or may not have high caloric intake; chronic lung disease (eg, cystic fibrosis); evaluate for obstructive sleep apnea (eg, ask about snoring and pauses in breathing during sleep); congenital heart disease; children with cardiac disease or acquired heart disease have chronic congestive heart failure (CHF) and/or chronic hypoxia; central nervous system (CNS) disease—usually overt; children with cerebral palsy often have feeding difficulties (eg, reflux); children with poorly controlled seizures may not eat well; neuromuscular problems (eg, hypotonia); swallowing disorders; chronic renal disease—often occult; chronic pyelonephritis; renal tubular acidosis; chronic renal insufficiency; children usually do not have overt symptoms or physical findings; gastrointestinal (GI) disease—celiac disease most common GI disease to cause failure to thrive; 40% of patients with celiac disease symptomless; children with malabsorption may not have typical steatorrhea in stools or history of malabsorption; small bowel or pancreatic disease; Schwachman-Diamond syndrome (pancreatic exocrine insufficiency with no cystic fibrosis); chronic giardiasis; gastroesophageal reflux common; endocrine disease—rarely causes failure to thrive; children with growth hormone deficiency tend to be chubby, with falloff in linear growth rather than weight; adrenal insufficiency often associated with vomiting or diarrhea, but incidence in children decreasing; primary or due to hypothalamic or pituitary problems; hypercalcemia causes vague nonspecific symptoms (eg, failure to thrive, constipation, irritability); child with failure to thrive and hyperthyroidism usually floridly hyperthyroid (rare in first 3 yr of life); hypothyroidism tends to have more pronounced effect on linear growth than on weight; genetic or chromosomal disease—can be occult; usually associated with dysmorphic features and/or psychomotor retardation or seizures; includes inborn errors of metabolism with or without associated metabolic acidosis; immunologic disorders—consider AIDS and other immune deficiencies in children with recurrent respiratory illnesses or other infections |
| Behavioral causes: may involve problems with parents or with child or both; may involve temperament or personality mismatch between parents and child; does not necessarily imply intentional neglect or abuse; psychosocial deprivation or deprivation dwarfism; child factors—apathy; after severe prolonged failure to thrive, child appears to have given up; irritability; children with delayed language or social development may not show signs of hunger; child with visual impairment may have poor eye contact with parents during feedings; parental factors—unrealistic expectations (about, eg, what child should be doing or eating); feelings of rejection from upbringing or life situation; depression; marital or job stress; socioeconomic problems (failure to thrive higher among children of poverty); lack of parenting skills; drug or alcohol abuse; during history, look for other events that can contribute to emotional or behavioral failure to thrive; disorders of maternal attachment—early parental life deprivation; loss of parent figure early in life of child’s parent; illnesses during parent’s childhood; death or illness in previous children; events during pregnancy (eg, physical or emotional illness); perinatal events; acute illness of mother or infant; congenital defects or early illnesses resulting in child being taken away for hospitalization; characteristics of parents—raised in non-nurturing environment; loneliness or isolation (find out whether parent has extended family or friends or parents); immaturity; passiveness; reasons for excessive guilt or anxiety; appear to have little enjoyment from interaction with child; characteristics of family— overwhelmed by problems (eg, housing problems); evidence of social maladjustment; financial or marital difficulty; unable or unwilling to use available extended family; lack of close friends and recreational time; lower educational or socioeconomic status; large number of children close in age; medical or mental illness; alcohol and drug use |
| Evaluation of nutrition: diet diary—detailed diary of what child ingested for 5 or 7 days; must be analyzed by dietitian for content; calculate required dietary intake for age and ideal weight of child (eg, 1000-1100 calories daily required for child 1 yr of age and 10-11 kg); assess complete nutrition including vitamin and mineral intake; behavioral issues—ask about environment in which child eats; address pregnancy, perinatal history, child’s developmental milestones, feeding schedule, behavior, family history, economic and work issues, marital issues, and spousal abuse |
| Physical examination: observe behavior of child with parent and with others; try to observe parent feeding child and feed child yourself; if findings suggest interactional problem, early psychologic intervention and counseling appropriate; rarely, infants need hospitalization for further evaluation or nutritional support |
| Laboratory work-up: limited; guided by lack of clues from history and physical examination; red blood cell count to check for anemia; sedimentation rate for inflammation; urinalysis and urine culture; chemistry profile—electrolytes; serum urea nitrogen (BUN); creatinine; calcium; phosphorus; total protein; albumin; if initial screening studies negative, consider screening for celiac disease with tissue transglutaminase antibody test; sweat chloride test can be performed for calcium malabsorption; request Giardia testing if indicated; upper GI or small bowel follow-through; HIV testing; consultation indicated if all laboratory studies negative and child shows no signs of psychosocial causes or response to optimal nutritional intake |
| Treatment: nutrition—increase caloric intake; counseling for parents; vitamin or mineral supplement if indicated; tube feeding (eg, nasogastric [NG] drip feeding at night or continuous drip feedings) may be required; follow weight gain; underlying disease—treat specific disease; treatment based on specific diagnosis; behavioral problems—approach with multidisciplinary comprehensive team; institute appropriate intervention while child receives adequate nutrition; placement in foster home last resort |
Educational Objectives
| The goal of this program is to educate the listener about ethical decision making in neonatology and the management of failure to thrive. After hearing and assimilating this program, the participant will be better able to: |
 | 1. Identify delivery room situations that require collaboration with parents in ethical decision making. |
| 2. Define futility in treatment. |
| 3. Review guidelines and statistics about lower limits of viability. |
| 4. List most common causes of failure to thrive. |
| 5. Perform laboratory work-up on a child with no obvious causes of failure to thrive. |
Suggested Reading
Cole FS: Extremely preterm birth--defining the limits of hope. N Engl J Med 343:429, 2000; Contro NA et al: Hospital staff and family perspectives regarding quality of pediatric palliative care. Pediatrics 114:1248, 2004; D'Amico MA et al: Presentation of pediatric celiac disease in the United States: prominent effect of breastfeeding. Clin Pediatr (Phila) 44:249, 2005; Gahagan S et al: A stepwise approach to evaluation of undernutrition and failure to thrive. Pediatr Clin North Am 45:169, 1998; Harrison H: The principles for family-centered neonatal care. Pediatrics 92:643, 1993; Lorenz JM: Management decisions in extremely premature infants. Semin Neonatol 8:475, 2003; Marlow N et al: Neurologic and developmental disability at six years of age after extremely preterm birth. N Engl J Med 352:9, 2005; McElrath TF et al: Contemporary trends in the management of delivery at 23 weeks' gestation. Am J Perinatol 19:9, 2002; Pierucci RL et al: End-of-life care for neonates and infants: the experience and effects of a palliative care consultation service. Pediatrics 108:653, 2001; Schwartz ID: Failure to thrive: an old nemesis in the new millennium. Pediatr Rev 21:257, 2000; Singh J et al: End-of-life after birth: death and dying in a neonatal intensive care unit. Pediatrics 114:1620, 2004; Tyler M et al: Feeding method and rehospitalization in newborns less than 1 month of age. J Obstet Gynecol Neonatal Nurs 34:70, 2005.
Faculty Disclosure
In adherence to ACCME guidelines, the Audio-Digest Foundation requests all lecturers to disclose any significant financial relationship with the manufacturer or provider of any commercial product or service discussed. For this issue, the faculty reported nothing to disclose.
Drs. Thompson and Sockalosky spoke at the 31st Annual Family Medicine Review, presented May 23-27, 2005, by the University of Minnesota Medical School, Minneapolis. The Audio-Digest Foundation thanks the speakers and the University of Minnesota Medical School for their cooperation in the production of this program.
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